Fatigue is almost worse that the other symptoms. As much as I hate living in a bathroom sometimes, the fatigue is worse. I feel so guilty for being useless. My Dad is 80 and does his best to take care of things, but at this age I should be taking care off him.
I was raised to believe when things are not going your way, work harder. And that is impossible when working hard work will send me into relapse further than I am.
I focus on the success stories I read on the internet and the two things they have in common or good diets and exercise. Many stories mention two weeks of adjustment that your body goes through to adjust, which are awful, but achievable.
Currently I am in a relapse caused by rejection of Remicade. Prednisone is all that is keeping me from crashing and burning into the hospitable again.
I saw my PA last week and she is worried due to my c-reactive protein being 181 when it should be 8. So I am seeing the head doctor in the office on April 9 after we see if I react well to the Imuran I just started.
I have a feeling the only way to beat the ever lasting fatigue is to get moving again. Also, I was an extremely active person before becoming a Crohnie, busy 6 to 7 nights a week, volleyball three nights, parties, friends, movies, plays, concerts and hikes in the mountains. I miss them all.
Some days I have a hard time getting out of bed and up the stairs, only rising to go to the bathroom or get drinks and food.
I take a lot of vitamins and follow my nutritionist's advice as much as possible.
The B-12 under the tongue has helped my legs fee like they are part of my body again. My hemoglobin is still low, but better. It makes sense since my immune system is working over-time and was retarded by drugs, I should be worn out, but I don't like it.
As soon as I get back on the road to remission, I need to fight through this and get active again before I go completely insane.
A part of me feels like a lazy bum. One thing I am learning is not to judge others. I often look good on the outside and people are so happy I lost weight and think I am fine, but on the inside I am in hell sometimes with cramps and feeling like everything is stuck on my insides and it goes slowly through my inflamed ileum then drops to my inflamed colon. Right now, I can't muster the energy to walk around the block, which upsets my dog almost as much as me.
I refuse to give up on a goal I set before the onset of this. I am going to ride over Trail Ridge Road on the dirt road next to the highest paved road in Colorado, from Estes Park to Grand Lake, where I will rest a play a few days before heading back over the 11,500 feet above sea level pass. I would like to do it at the end of this summer, it closes around October 1.
My doctors and others think I am crazy, but that just gives me more motivation. If not this summer, then next. I have a friend with Crohn's who rode his bike across Canada from the Atlantic to the Pacific. He took 6 months to get into remission. I am on my 6th month and back at zero due to a Remicade rejection. I hope to get on another Biologic and then kick this fatigue out of my life. I refuse to believe I will never achieve, I refuse to let Crohn's dictate my life. I believe I can be Victim with many excuses, a Survivor with rationalized excuses or a Thriver with no excuses.
I am not yet there, but I will have to stop being a survivor and thrive, I have no choice. I don't know how I will get there, I just know I will. And the days when I only see darkness are getting fewer.
I was 4 days away from complete organ failure and death when I first got hospitalized with my intestines completely shut down. I never want to be that close to a my demise again until my actual expiration date many years from now.
I got so much living to do, i just need to find my way out of the swamp and fatigue quicksand.